“Hi Jess, how's the music going?”
The first thing anyone asks if they haven't seen me in a while. And it's hard to know how to reply. I’ve had no choice but to say something of a goodbye to singing and music. The last song I’ve written really feels as if, for now, it could be my last. It’s taken months to feel able to write about it. Let’s see if I can talk about it today without mud bathing in self-pity or bashing you over the head with my hidden disability. Let's get this straight: I'm lucky. I'm privileged that this is now even a thing. And I'm fine. Not a clipped, British, stiff-upper-lipped kind of fine, but a 'this is still one of the best things that has ever happened to me' fine.
Perhaps this is how a footballer who can't play or a dancer who can't dance feels. I'm the singer who can't sing, the performer who can't perform, the new producer who can't work. And I struggle, still, 16 months on, to believe it - because technically speaking I almost can. I have managed to write a song and sing it into my iPhone. As you'll see I can just about play, even if something important is missing. I’ve been able to walk small distances for over a year, can definitely talk and present very normally so have really, really struggled to accept this.
It's the cost. The cost is vast. The cost, it turns out after months of experimenting, probing and (you might have to get used to this part) weeping at the piano, is my recovery. I've had to choose. And it doesn't feel very real. It feels like the exaggerated stuff of melodrama. And while it has mattered and still matters so very much to me, now, I equally feel the lightness of it not mattering that much at all. Not in comparison to a future of living more normally. A future of waking up like I used to and starting a perfectly average, limitless day. A day without a moment's thought about what I will or will not be able to do. Walking fast, walking long; real, proper heart-beating exercise, thinking at speed and whatever else: rehearsing, singing freely, maybe even performing again, socialising, planning. Hell I'm going to love making normal plans again. To have a chronic illness is to see just how abundant life is in really cool stuff to do. Endless events, interesting stuff, fun stuff, zip-wiring in Snowdonia, talks with Brian Eno or parties in Catalan castles. Even work falls into that category. I'm grateful for it all existing even if I can't get to any of it yet. That's the thing - whatever the consultants might be saying, I know I'll be back and healthier than I've ever been. I know it's all waiting for me. In the meantime I have to make sure there's no sense of waiting at all. I have to make life work as it is now.
The first thing I notice when I start writing about my singing and writing is how serious I sound. Hell did I take it seriously! I guess that's inevitable. If anything had the sense of a life's work, that's what music was to me. My passion. My greatest love. But to understand where I am now; a truth that's still working itself out, this is where I've come from. I feel as if I'm writing about a different person. Someone who feels so far away. This is a picture of where I used to be, as honestly as I can paint it….
By the end of 2015 my music had hardly ever been in more of an exciting place. Publicly, nothing was happening. I’d disbanded my latest live project of about two years with a long-standing cellist, guitarist and drummer. I’d been performing my own songs regularly for about 20, with the last 6 years in London. There hadn't been a release for years - I had this funny, disquieting sense that I was only as good as the last thing I'd put out there. Though the way our material sounded live excited me, the value of what we were creating, the concerts and all that went with them felt somehow ephemeral and passing. A misplaced judgement perhaps, but that's how it seemed.
I lived to sing. Sometimes (OK, a lot of the time!) I was a bit too much of a perfectionist. As if there was some holy state of crystalline grace my vocal chords would eventually reach. I trained as hard as any vocal athlete does. Usually daily. Most of the time I simply loved the sensation of singing and where it took me. When I sang I felt I truly connected with people. And beyond that, I connected with a power and beauty far beyond myself or what I would ever need to understand. I’ll even confess to a part of me who felt as if I’d been zapped down into human form from another planet. That part of me found a home in my voice and music.
With my focus so deliberately on learning to produce myself, it felt as if the plane was just taking off. This was it. Perhaps it always feels as if you're just starting out when you're that absorbed in the craft of it. I'd recently joined an industry mentoring programme and was getting feedback and advice from writers of the hit songs you hear every day. After a lifetime of having decided I was a technophobe, I was now a music producer and morphing into a production geek. I was just about to get a handle on my own little studio and while it was a complicated collaboration, the first person I was producing also happened to have a Grammy. Some of my dream music publishers were starting to express an interest in my work.
If I wasn't sleeping, eating or teaching I was at my studio. The excitement was about everything that was now at my fingertips. I knew how wrapped up in it all I was, that I was getting a bit run down and needed a break. Off to India for Christmas 2015 for a rest, some yoga and surfing and..... BOOM!
Fast forward to January 2017 and in a slow burning phase I was determined to still call recovery. It still felt as if my being was submerged, deep under thick, syrupy water. Only I had lost any sense of depth and was trying to function as if I was breathing air. Without too many wild expectations, I thought perhaps I could slowly, steadily and above all, patiently tinker away and create music and even record again. Here I was signed off work, perfectly lucid (I thought) if physically limited, back in the family house where I grew up in rural Oxfordshire, with my favourite piano in the world (a Petrov baby grand) and a room I could convert into a decent studio. And all the time in the world. I thought I was being realistic. I could barely sing my way through half a song a day. And I had some golden advice from a mentor: “Why don't you just record your voice as it is.... exactly as it sounds now?" This was the answer. Sing softly, gruffly, do whatever it takes to sing effortlessly.
It was clear only a few days in that recording anything was not going to be a physical reality. But for every route that turned into a dead end in terms of creating, I knew there would always be an alleyway out.... OK, I can't record, then I'll write. I'll lie here and sing into my phone from bed. And that’s what I started doing.
Sometimes when you write songs, melodies and words float down as lightly as feathers from the clouds. It's as effortless as reaching out an arm to catch the best bits as they hit the ground. Other days it's more work. Sometimes much more. I still had the essence of something in my head. A large part of this one came easily. It had come to me moments after I'd been forced to quit the music mentoring programme for the second time (“We’ve had students recovering from cancer who have found our programme beneficial, you really should be able to write something”). I had felt such a sense of abject failure I went straight to the piano and started, in my own whispering way, to write a song about it. I played with one hand so the other arm could support my my ridiculously heavy head. The earliest hints of Spring 2017 that I definitely didn’t feel ready for, pushing up through the frozen earth outside the window.
And so began endless attempts of starting to write, stopping, breaking down, leaving it for a bit. Having another go.... There was this strange tidal wave of emotion that would rise up and crash over me. Some days it felt as if it was a response to having all my life force sucked away. To the feeling that the world was almost closing in. My response to the fact that the sounds I wanted to make would no longer come out of my mouth. Some days the tidal wave stopped me playing before I even got to singing. Why can't I do this? How can I expect anyone else to believe I can't, when I can't even believe I can’t? Isn't music; my healer, my balm, my confidante, meant to step in and save me now?
In the Hollywood movie version of this, or perhaps if I was a long-dead composer with proper cojones, I would battle through it all regardless and change the world with the most amazing body of work I've ever created. Unfortunately (for my ego at least) that's the complete opposite of how anyone ever recovers from CFS. If you're that determined to get better (and most people are) you're faced with a strange paradoxical battle in the opposite direction.
And during that time, it arrived in the early hours. A stowaway on a perfectly ordinary musical thought. The kind of thought that ran as a constant background to whatever else I used to spend my time thinking.... a lyric, a better harmony, a little dance track overheard in the morning that is morphing itself into a film score. Still in familiar territory, I curiously open a little trap door in my mind and find myself in what I can only describe as a chasm. A vast and infinite space of grief. It unfolds into nights; myself alone with it deep in the dark. Uncontrollable. Overpowering. Grief, it turns out, when it finds you, is non-negotiable.
Don't take this away from me.
Take away rehearsals, performing and the world I know. Take away co-writing, recording, learning, collaborating, take away chances to meet my musical heroes, take away any kind of success I could ever wish for. Don't take away the flight of channelling and improvising. Don't take away my voice, a piano and an idea. Shut us in a room together for the rest of ever with nothing else but this. But this..... don't take this away from me.
It's no longer about Giulio, Pierre or anyone else lost in 2016. This time it's my music. And deeper than that. It turns out I'm grieving part of myself. My identity. Not simply my face on a CD cover, but a deeper, truer part of who I am. I wish there were a better choice of words but I can only describe it as a death of the ego. And not necessarily the ego that so readily gets such a bashing. It feels as if there is a very real part of me that is dying. It doesn't feel particularly wrong or right - it just hurts, it feels enormous, it just...is.
And to be clear: I know I'm not dying. The people who say there is no cure for CFS don’t know what they’re talking about. This is a coma, not a death. And if this really is the end of my music, there is a whole world of creation or being out there anyway. But that's not how it feels at the time. And I have to surrender as if it actually is forever. This is the extent to which I have to let go. The price I have to pay. The murky bottom of the ocean I have to touch before I can rise to the surface again.
Later, in the house alone one day I get slightly more deliberate about the process. A steely this is what I have to do. And once I've rested for a few hours to recover from shuffling some porridge together and getting dressed.... I sit. No radio, writing, reading (I struggle to read much anyway), Netflix, that reflex and urge to check my phone. Everything off. Just me. Sat here. With whatever this is. Whatever you need to get better Jess, you have it right here. This feels both the kindest and the hardest thing I can be doing right now. It doesn't take long for the chasm to arrive again. And I spend the day there again, getting more familiar with it, with the foggy, unrelenting sadness of it, with whatever the hell is going on.
Eventually I did more or less finish the song. The hardest song I’ve ever written. I sang and played it into my iPhone in one take, sang the harmonies from bed when I was able to another day, dancing this tightrope between pushing through while on a roll without it being too much of a push too far. I waited another four days until I had enough voice left for version two. But something in me was so totally and completely used up in the process. Simply getting through an entire day was using up so much more of me than I already had. And of course, I only got through because the song so badly wanted to be written. A painful birth. And as a song, well, it's OK, it still needs some work. But it's special to me. Here's how it starts:
I sink into the ashes of the crash,
Did I burn too fast and true to last?
I drove a thousand miles without a spark
Thought I could blaze a trail to light the dark
I wanted to be your story of redemption
I wanted to be the one who overcomes
I thought that I could dance across the coal fires
I thought I was a warrior of love
The truth, like the despair, sneaks up on you too. In the ashes of all that grief, the truth exists in the quiet places. It hides in the still corners of life that probably would have left the older me bored to tears. It's almost domestic. It's low key. It's incredibly, stupefyingly simple. Almost too simple to grasp.
I reach the point where it is so much easier not to touch the piano. Not to try to sing again. Not to listen to new exciting music because I'll get production ideas and it will all be set off again. I promise myself I don't have to touch music again for as long as I need to. And eventually, I make something of a peace with that promise.
I haven't touched the piano or sung for two months. Yesterday I turned down slots at my two favourite Glastonbury stages, inconceivable to the older me. But it felt uncomplicated and light, suggesting someone to them who is super talented and deserves a break. It would have been my eleventh year. Then I went to the piano to find out how things are. The wave has passed; no more crying. Progress. My voice can't make it all the way through a song yet. And trying effects how much I'm able to speak for the rest of the day. I've been told that singing is 'higher functioning', that it could be one of the last things I'll ever get back. But of course it will come back to me if and when it needs to.
There was nothing empty about the songs I created. They were full of soul and riches and honesty and beauty. But there is a peace that arrives with the realisation that the thing you were always driving towards, the thing that you thought would get you somewhere, was empty all along.
An ME/CFS Thriver